I’m new to the forum, though was diagnosed in 2021. Hopefully the following situation is familiar to some members and that there may be solutions.
Like many of us I freeze on the spot from time to time. I have this reasonably under control though I’m experiencing problems when getting on and off buses.
When getting on I sometimes freeze before getting to the door and if the driver has pulled up beyond where I’m standing s/he either cannot see me or decides not to wait (a reasonable decision since I might simply have changed my mind and decided not to catch this bus). The net result can be the bus goes off without me.
Getting off the bus can present a similar challenge. Even if I’ve stood up before the stop it still happens that I freeze and so the driver might think I’ve had a change of mind, shut the doors and drive off.
Obviously in some circumstances I can call out to the driver to hang on but if I’m outside the bus s/he may not hear me and it’s all a bit undignified.
The bus company, Stagecoach, responded sympathetically asking me to provide details of where I usually get on and off and what I look like. However, for obvious reasons, that’s not really a solution.
One possibility might be for a suitable organisation - perhaps the bus company or Parkinson’s UK - to design and issue some sort of badge. Provided it had some distinctive logo there would be no need to explain on the badge what it was for, since bus drivers could be informed as part of their normal briefing. To be visible it would need to be a certain size which might itself be challenging
Hi there, and welcome to our friendly forum community. I just wanted to say hi and to let you know that we have a lot of very helpful information on our website at Parkinsons.org.uk including daily activities and research news. You can also call us at 0808 800 0303 for free and confidential one-on-one support.
I’m sure other members will jump in to welcome you and give you advice. Meanwhile, I’d encourage you to look around and see what you discover.
Good evening Modalshifter & welcome to the forum. I am 71 & was diagnosed with Atypical Parkinson’s in June 2023 following a positive Datscan. My major problem is also gait freezing. I drive a car & have a blue badge. So no bus problem for me.
I cannot go shopping as I freeze almost as soon as I stop in a shop & start shaking. Crossing roads can also be a problem if I have to wait for a car to go past. I have a walking stick & find people in cars are aware of me & often stop. Use the zebra crossing or cross at the traffic lights one might think but that involves a longer walk & I can’t always walk that far.
I now have my medication delivered to my flat as I do my groceries & of course we have Amazon for everything else. So no big deal realy.
My suggestion would be to wear a bright yellow top or yellow sash so that you can be easily recognised. It would be good if Parkinson’s Uk could have florescent tops or Parkinson’s sashes with Parkinson’s on them to promote both Parkinson’s & awareness.
I would certainly contact stagecoach as you have done so that they can look out for you.
Thanks, Steve2, both for the welcome and the idea - which is similar to my own thinking so I’ll put it to Stagecoach, my MP etc. I can still drive but choose not to most of the time since our urban bus service is adequate.
Hello modalshifter
This can be a problem, and to be honest it can be a problem on trains too - so much so that I was put off travelling alone by train for some time. However I have a few strategies that help.
Getting on the bus is less of a problem if I am using my rollator as that is hard to miss but more often than not I will just use a walking stick as there is often not a lot of room on a bus. However what I tend to do is this.
Getting on a bus. While waiting for a bus I try to keep moving a bit, I find there’s more chance of my being able to move when the bus arrives or at least the freeze may be a bit briefer. If I just stand, I tend to stiffen and then it is much harder to get moving. I also make sure I am standing close to the kerb so that when the bus approaches I put my arm out to signal I want that bus even if someone else is doing it because he should have a least seen me even if he stops a bit beyond the stop itself. Finally I make sure my stick is visible. It may seem a bit extreme if you don’t need a stick but it may be worth buying a folding one you can put away. You may not like the idea but all you are doing is making sure as easily and simply as you can that the driver sees you, can see you indicate you want to get on his bus and that you have a mobiliy problem.
Once on the bus i will tell the driver where I am going and that I can be a bit slow to move and I’ve yet to have a driver that has been anything other than really helpful. Finally, I try to sit in a priority seat but if they are occupied, I will sit as close to the front as I can.
By doing this I find I have virtually eliminated the stress/anxiety this can cause - although I am still a little apprehensive until I have actually got on. Maybe something along these lines will help you.
I don’t know what the bus service or drivers are like where you are. Here, in a small, rural area we all know each other, but this would not be the case in a larger town or city. I would do three things
Contact the company and request to speak to the H&S or training department and discuss options with them.
On boarding, identify yourself and condition to the driver and tell them you will need time to alight. Also, advise them of your destination and hope they remember what you said, or ask them to notify you when you arrive, that way they will have to be aware of your getting off.
Get yourself a lanyard badge and hold it up if you are unable to board due to that momentary freeze and hopefully the driver will see it. Also knock on a window if you can to alert a passenger who might then alert the driver.
Be careful if you use a stick as there is a case where an elderly lady’s stick got caught in the door and she was dragged under the wheels of the bus and it did not end well.
These might not work, but it’s worth a try. Good luck.
Hello Artgeek
Re the stick if you need to use one you do have to be careful because it is easy to get it caught in bus and train doors. I was thinking rather more if you don’t need one to help you walk, it would be another visual signal to the driver that you have mobility problems. The fact is you do need to take care when getting on or off buses and trains or indeed in and out of cars because at some point in the process you will potentially be a bit off balance.
On this subject an issue for me is that my local train company put new rolling stock on all their routes so we now have very nice trains - previously we were a bit of a poor relation. However these trains are a good deal higher than the old ones and the gap between train and platform can be big and sometimes it is compounded by the doors opening on a curve. When I say big I mean it, sometimes it is the best part of a foot and I do wonder how many potential passengers find this almost impossible to negotiate - even the ramps they use would possibley not work since the gradient would be too steep to be used safely. I’m waiting for an accident to happen and have to hope it won’t be too me
Tot